Moaning and Grunting

[kylisa]

Is it normal for ALS sufferers to moan and grunt even when there is nothing wrong?
My mother does this a lot but, she says she isn't hurting or straining to move. Just wondered if any other caregivers have experienced this.

 

[Flowerpot]

Hi Kylisa

My Mum sometimes does this when she is distressed or when her lability is particularly bad . I try to get her to calm by breathing in through her nose and exhale through her mouth. This is getting increasingly difficult for her.

Hope this helps

Flowerpot

 

[BethU]

Hi, Kylisa ... I have been aware lately that I'm making a lot of sounds all the time ... little grunts and muttering all day long. I have no idea what this is about, but I'm glad to know I'm not the only one!

 

[trying to stay positive]

My husband does that whenever he moves! Especially when getting up from a chair or bed.

 

[msde302]

My mom would be cracking up right now. I used to catch her making random noises all the time! She'd laugh, deny it, then wonder why the heck she was making the random murmurs, or noises. She'd be delighted to know she wasn't alone!

Kaija

 

[brendapals]

Add me to the list of grunters! I didn't realize it until I spent all day today Christmas shopping with my sister,
hugs to all,
brenda

 

[SteveS]

Been noticing that with my wife too while she is transferring from bed to chair and to toilet. I can hear her doing it from the living room and she often mumbles to herself the whole time. I have been just chalking it up to frustration and concentration when trying to move. I think we all do it occasionally or have other strange habits. I tend to stick my tongue out a bit while concentrating on stuff. Something I inherited from my dad...lol

 

[Marjorie R. Wilcox]

Yes, this last year Rick has begun to do increasing amounts of talking to himself. I made up my mind that I'll have to endure it and say nothing. It seems to help him think if he speaks his thoughts out loud. He'll count aloud or respond to the tv program, or the like. He mumbles all day long.

There are also changes in his behavior. Every once in a while I see changes in what he does. For instance he always likes to push the shopping cart for me to help with his balance, and when we get to the check-out he'll stop about 6 feet from the checker and carry each item the rest of the way. Or when we get the groceries bagged and we get to the car, he'll stop several feet away from the car and carry the bags the rest of the way. I pointed it out to him and he said, "Do I do that?" He didn't realize.

He also has lost the ability to back up the car and turn the wheel in the right direction he wants to go. I had to give him a refresher course, and told him he'd better just park facing out if he finds a place to drive straight through and stop.

We are wondering if we can really consider some form of dementia in with this ALS.

He also incessantly scrapes his plate and "twiddles" his fingers if his hands aren't busy otherwise.

These things are just piddling annoyances, but I realize my sweetie is changing. It is sad.

 

[hopealive]

Mom used to grunt and make funny noises all the time, I actually miss that now. It was just the noise that came out when she would want to sigh etc. Totally normal. Now, she doesn't make any sound, it is so strange.

 

[BethU]

Marjorie ... I find I'm doing a lot of little repetitive movements, along with all these little sounds. I'm consciously trying to stop the sounds, and I do manage to catch myself a lot of the time, but I guess it's something I'll have to live with.

There are dementias associated with ALS, but it doesn't sound like Rick is in that ballpark. He sounds like a wonderful man, by the way ... and he is lucky to have you to care for him!

 

[Marjorie R. Wilcox]

Yes, Beth, I am one of the most fortunate people in the world having Rick as my husband. He so adores me and spoils me rotten. It makes me want to give him the world and the stars back. You know, everybody could learn from that. If we all treated each other like that, there wouldn't be any divorces.

Rick is treasurer now for the local Elks Lodge. If he counts outloud or talks to himself, I am sure his buddies there won't think anything of it. He is so wonderful, and everybody loves Rick. He helps with Bingo once or twice a week... keeps track of all the money and reads off the winners' numbers and gives the payout. He can still get around pretty well. He has to nap before we go there, and his legs spasm a little when we get home, but this membership and being treasurer has given him a new lease on life.

Rick wasn't really happy about having to be disabled. He has three degrees and can't work anymore. He can however, concentrate on his duties at the ELks. If there is a nickel missing in the books, he can find it!

ALS is prominent in his life, but because of his positive attitude and keeping his mind on helping others, I believe he will be fine to the end. He never complains. Even when he got shot accidentally by a homemade cannon and had to have six surgeries on his leg, he never swore or complained................ and he doesn't drink either.

Thanks for all your kind words, Beth. We always look for your posts and appreciate them. I so wish we could spend an afternoon together in person.

TO EVERYONE OUT THERE< HAVE A VERY MERRY CHRISTMAS AND A HAPPY NEW YEAR! Marjorie

 

[somenone's daughter]

My father has FTD/ MND. The ALS symptoms are secondary to the dementia, which onset in his mid-fifties. It appeared, at first, as worsening mental illness. Very few doctors study FTD or Picks disease, because they are exptremely rare. The NIMH has a study on this disorder. Getting a correct diagnosis was very difficult. If you suspect dementia, you will want to look into it quickly for financial planning and (above all) planning care. There is a book out called What If it's Not Alzheimers? Internet information works best with Frontal Temporal Dementia and MND in the browser. Otherwise, you get a bunch of florists.
Good luck to you.
My father was a brilliant, although unusual (and not always kind) man. Oddly, he could still do calculus when he could not be depended upon to check the mail or drive. He still remembers his honeymoon, but not last week.
He can sing songs, involuntarily, but has lost even most of his remaining echolalic speech.
Your husband sounds like a wonderful man--and you must be a very compassionate person.
All the best.

 

[CindyM]

Hi Daughter- I understand much of what you are going through. My Mom has Alzheimer's. She really does not know which end is up at this point. ALS is bad enough without your Dad having dementia on top of it.

 

[sharonca]

Someone's Daughter -- My mother had Pick's disease and I have wondered - now that I have ALS - whether she also had ALS at the end. There was no reason for me to suspect it until now when I compare my physical symptoms with hers. There was no atopsy so I'll never know. She was rarely seen by her neurologist. I had now knowledge of ALS.

Sharonca

 

[newbie]

moaning and phonation

My husband has bulbar onset ALS. He experiences laryngeal spasms which have produced some strange problems. One thing is that he makes grunting sounds that are associated with movement. Most of us slightly hold our breath (valsalva) for a second when we strain - situps, in the bathroom, lifting... because of bulbar problems, my husband cannot close the glottis to create that internal pressure. So, the passage of air through the vocal cords makes the noises when he rolls over, gets up, strains in any fashion. He also moans, long moans, at night. The moan will be for the entire exhale...and it is a slow exhale, longer than a normal out breath. He is having laryngeal spasms when that happens, with the vocal cords coming together and the air passing though on the exhale makes this long, drawn out phonation. Sometimes, when he's just sitting there relaxed, he will make some odd short little sounds - these seem to be related to the presence of a small amount of mucous that needs to be cleared from his airway. If he uses the cough-assist machine at these times, the sounds stop. I think his body senses the problem but it has not reached his conscious awareness yet, not until it reaches the point that he would need to actually cough (which he cannot do very well by himself and so uses the machine). I'm not medically trained, but this seems to be what goes on here.